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I think it would be a great idea to have my daughter checked out along with me. The idea that she may lose as much as I have to this disease paralyzes me! If I am accepted to the Buffalo study I will ask if she can be a healthy subject.

ariehs wrote:The Buffalo study is NOT releasing results to patients or their doctors. We are volunteering (as I signed up, too) to be examined for their research, not to be treated.

If you want to know your results, getting in touch with Dr. Haack or Dr. Dake are your best bets. I know I'm pushing to get on their studies, too.

Hi, I know someone who is going to get tested on their own dime tomorrow. Hopefully will get permission to post the info up, as this would serve to bolster others to not wait for a few hospitals here and there to get er done as they say. I'm sure you can get the results from Buffalo later on though right? After the info is compiled, blinded and studied and all that? That's half the battle right there, it's one big mighty thick file to place on an Interventional Radiologists desk and ask, "can you fix this?"

And thank you to all who are participating in the study, you are doing much to further the advancement of this in the scientific world, which will snowball to other places wanting to jump on board in a hurry. Considering where this was 6 months ago, you couldn't have predicted where it is now or where it is going to be in the near term. This is definitely the time to push and push hard.

The kids stuff. I've thought much about this situation. I have two precious darling little monsters I mean girls, and obviously with so much auto-immune type diseases in the family (2 lupus women, 1 fibromyalgia, and moi), this is a consideration big time. However I do want to approach it very gingerly and definitely well into the future since they are so little now. Doubt they would stay put for an hour long MRI/MRV haha. I know all that goes without saying, but there's a psychological part here that just doesn't seem to be age appropriate for kids when they aren't of an age to be able to understand it in context. Oh trust me I would LOVE to get em in tomorrow just to see if there are any congenital abnormalities, but will be watching from a distance for any signals of neuro deficits, but obviously not in a neurotic fashion, let em be kids and when the time comes we'll see what's what, I didn't see any ages mentioned are we talking older kids or young or what? I'm interested to hear how others are dealing with this too.

Mark - my little guy is 3, and says all the time that "Da sad because Da have a bug in his head." That is already too much for him to deal with, I think. I don't want him to worry about a "bug" in his own head.

We just support him with Vit. D3, fish oils, etc, and hope for the best until later.

Johnson wrote:Mark - my little guy is 3, and says all the time that "Da sad because Da have a bug in his head." That is already too much for him to deal with, I think. I don't want him to worry about a "bug" in his own head.

We just support him with Vit. D3, fish oils, etc, and hope for the best until later.

Oh I think you're doing plenty as it is, good job and you are giving your kids good stuff whether they need it or not! Think about it, instead of waiting 25, maybe 30 YEARS for the maybe yes maybe no "proverbial MS shoe to drop", both you and them will have plenty of time to do a scan or two, maybe wait 5 years do another, then forget about it or treat it. Heck by then they might even have a cheek swab for markers wouldn't that be great?
At any rate, like how my first onset was, can you imagine them saying, "probable MS, first episode, get him down to MRI/MRV ASAP, you go in and possibly get treated and ARREST the first epi in it's tracks?". I mean it was nice being a "textbook case study" for all the cute med students doing rounds with the hungover head neuro with watery eyes and a 3 day shave who looked like he had been doing this about 15 years longer than humanly possible, but when it came time for the "so now what" part of the discussion, the treatment consisted of finding a regular neurologist and I didn't even HAVE a doctor, or insurance for that matter.

That would have sounded like science fiction just a year ago wouldn't it?

Let's hope that we are at the point that not one more child born today has to worry about an owwie in Daddy's head, or theirs.

SandyK wrote:Mark, my daughter is 18. Since I was diagnosed at 24, I have dreaded hearing that I have passed bad genes on to her.

I just want to know that I am doing all I can for her. I think by getting us both scanned in this study it will help some. I don't know if it will ease my fears, but it is worth a look.

I think that's great! My main concern was "going there" unnecessarily (for myself) when they were too young. I think your plan is stellar and well thought out. We are in a similiar situation with my wife's NFS, my kids have a lot of genetic hangers-on to be concerned with, but kinda like MS, (the genetic test will be a thumbs up/down thing), says nothing of what exactly the disease course will be in the future. So it would only be to rule out. I know that is what you are hoping for and pray that she comes back squeeky clean!

Mark, my daughter is 18. Since I was diagnosed at 24, I have dreaded hearing that I have passed bad genes on to her.

I understand the dread, but we don't know for sure that it is genetic (do we?). To me, that is much more of an unproven than Dr. Zamboni's theory. We (or some of our parents) may have been exposed to too much DDT, or radiation from a glow-in-the-dark watch, or lack of maternal exposure to sun during pregnancy, or a plethora of other potentials. There is only one commonality that I can deduce from the CCSVI/MS model, and that is CCSVI. I am the only one in a large extended family with this problem. I don't know that it is genetic. Never blame yourself for that stuff.

I hope that soon, we don't have to worry about our kids not leading long, productive lives due to CCSVI/MS.

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